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All-encompassing isolation when living with a chronic illness
I’m Sophie and I live with several chronic illnesses, the most disabling of which are my M.E. and vestibular migraines. I am mostly a wheelchair user when travelling anything more than 20 metres, something I never thought I’d be saying in my mid-30s.
A few months ago, I set up my blog, Mummying and M.E. as a way to raise awareness of living with various chronic conditions. Little did I know, it would become a form of therapy for me, a place where I can share the ups, the downs and everything in between.
When I was asked to write about the term ‘isolation’ for Scope, I was thoroughly honoured. As a relatively new blogger, to be chosen based on my previous work was a real boost to my confidence. However, I was extremely nervous, more nervous than for any other post I’ve written so far.
How would I put into words the crushing level of isolation one experiences when living with chronic illness? How would I explain what it really is like without sounding like I’m moaning and just being a Negative Nelly?
An all-encompassing force
Isolation is something that until you have really felt it, doesn’t make sense. It’s an all-encompassing force, leaving you a different person to who you may have been before. It is one of the things that, if you weren’t necessarily depressed before, you might be now. Isolation shows you who your real friends are, those that are properly there for you and really will be with you through thick and thin.
I used to be a primary school teacher. I was proud of my job and what I’d done to work up to it. I’d completed 3 degrees: undergraduate, PGCE and then an MA in Education. I was proud of having worked so hard. I enjoyed my job. I enjoyed speaking to colleagues on a daily basis and enjoyed basic interaction with others, both with the children and adults.
In my spare time I would sing in a choir, and even joined a running club to be able to train for the London Marathon. Each of these brought with them socialisation and again, interaction with others.
The impact of social interactions
Safe to say, nowadays neither of these hobbies are compatible with M.E. I’ve attempted returning to choir several times over the last year but each attempt at getting through even half a rehearsal left me thoroughly exhausted, ‘spoons’ well and truly depleted.
It doesn’t take much to realise that losing both one’s career and hobbies has brought with it a loss of interaction with others and therefore isolation.
Isolation in my case has been one of the hardest things to come to terms with. Alongside my M.E. and other chronic illnesses, I am also diagnosed with recurrent depressive disorder. This means my mind has a life of its own, plunging into a depressive state easily and frequently, often from the smallest or seemingly insignificant triggers. Time spent by myself for too long tends to be one of these triggers.
Beating isolation, one moment at a time
Therefore, I have to get myself out and about. I’ve had to hire a powerchair to do this. I just have to see people. More often than not that’s the cashier at the local supermarket down the road, or the barista at Costa (other coffee shops are available). The extent of our conversation typically is: “how are you today?” with the very British response of “good thank you” (even if you’re not actually ok, pouring your heart and soul out to a stranger is apparently frowned upon).
Therefore, on those days when it really is impossible to get out and about, where the sofa and/or my bed are my only destinations, social media is my interaction. To ‘meet’ people who are going through exactly the same situation as you, isolation and all, is wonderful. Isolation becomes that bit more bearable when sharing your community with other likeminded people. For that very brief moment, where you’re sharing amusing anecdotes, isolation is no longer. To the chronic illness community, thank you for this.
So, if you see someone out and about using a mobility aid (or not, remembering not all disabilities are visible), say hi and smile. You never know what that person is going through. You never know what impact your smile could have on them. You never know, you might just be able to relieve their isolation just that little bit.
What does the word ‘isolation’ mean to you? What do you do to help yourself cope with isolation? Let us know in the comments below!